Midwest Mary

If you are a caregiver, especially the primary caregiver, to someone who suffers from Alzheimer’s, I understand your journey. My husband showed symptoms of Alzheimer’s disease for 15 years. I know this turbulent voyage well.

You are deeply exhausted from the 24/7 care and the repetition of questions and demands. You also are lonely. There is little communication between you and your loved one, and it isn’t easy to find someone to replace you for an afternoon out with friends.

I also know that in the midst of those challenging days, there are moments of love, sweetness, and intimacy. Those priceless moments are only awarded to us who serve our loved ones.

The following poem and excerpt are from my book, Navigating Alzheimer’s. 12 Truths about Caring for Your Loved One. May you receive grace-filled moments along with your efforts.

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Like sunshine
on an overcast day,
rays of the man I knew
peek through the clouds
leaving me longing for more.

“Early in the disease, when I told someone that my husband had Alzheimer’s, I got that deer-in-the-headlights look, the one that signals something terrible is about to happen and there is nothing you can do to stop it. There was no hiding their concern and sorrow for what we were about to face.

Caring for a loved one with Alzheimer’s is like navigating a voyage on the high seas. The course offers an unpredictable combination of magnificent and turbulent experiences. Caregiver survival depends on steady footing, dependable support, and a lot of prayer.

As primary caregivers to someone with Alzheimer’s, our responsibilities are at the maximum. Our undivided attention is needed every second of every day. Our loved ones’ physical, emotional, and mental needs are in our hands.

Unlike caring for children, who also require undivided attention, the journey of Alzheimer’s is one of decline rather than growth, increasing dependence rather than independence. We must think for our loved ones in every way, and we realize that care will extend for the rest of their lives here on earth. Such intense care is wearing on our emotional and physical health as few other caregiving roles are.

But there is so much more to our experience than this. We also encounter grace-filled moments. The woman before us is the sibling we shared secrets with, the husband who was “our everything.” Even in the late stages of our loved one’s Alzheimer’s, we caregivers experience fragments of the person we knew. We hear stories from the past that we’ve long forgotten or never heard, and share tender, loving moments meant only for us.

The care required is intimate and soulful. It’s heart-wrenching and heart-warming. People with Alzheimer’s are often agitated, frustrated, and confused. But they also can be quite sweet, innocent, and profoundly appreciative of our presence.”

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For more information on caring for a loved one with Alzheimer’s see Navigating Alzheimer’s, The Alzheimer’s Spouse, and Inspired Caregiving.

©2024, Mary K. Doyle